VB Family Updates

posted by Katie

Here we go again

When Nathan first came home from the hospital we had a mile long list of follow up appointments and specialists to see. But very quickly each specialist gave Nathan a clean bill of health and said we didn’t need to visit them any more, or at least not until he was a year old. Time chugged along (flew by), and here we are in the limbo between birth date and due date (Sunday!), checking in with all of those specialists. Ophthalmologist, ENT for a hearing test, Dentist - as expected, all sent us on our way, or at least said ‘see you in a year’. And while we still have to visit with Otolaryngology (that’s the vocal chord doctor) and the Infant Follow-up Program, we know the drill there too.

But Tuesday’s appointment with Orthopedics was not at all what we expected.

Pretty soon after Nathan started pulling put on furniture and cruising around we noticed that his right leg was shorter than his left. As he’s begun to walk while holding our hands or pushing a toy we’ve really seen how much this “leg length discrepancy” impacts his walking and how he uses his legs. But it certainly hasn’t kept him from being mobile! For the past month we’ve been talking with Nathan’s physical therapist about a lift for his right shoe and waiting for this orthopedics appointment so we could get the lift already and get on with walking.

Instead, on Tuesday we learned that the issue is not as “simple” as a bone or bones in Nathan’s right leg being shorter than in his left. Even to my untrained eye, it was clear in the x-ray that something is not right with Nathan’s right hip. My first thought actually was that it was a lousy x-ray, the right hip just looked so clearly different from the left. I don’t know the fancy name for it (I’m sure the doctor told us) but Nathan’s right hip isn’t really in the correct place, and the ball and socket are not together. On top of that, the “ball” (that round bit at the end of the femur, right folks who remember their high school biology?) doesn’t look right – it certainly doesn’t look like the one on the left. All of this is causing the leg length discrepancy, but a simple lift won’t fix it.

It will take surgery to address the hip issues, recovery time in the hospital and then weeks, possibly months, in a full leg cast at home, followed by more months with a brace. We’re just at the beginning of all this so don’t really know how it will play out. I wasn’t even prepared to take notes as we talked with the doctor - a lift would not have required notes!

This is what we think we know/remember for Tuesday’s conversation :

- Surgery is absolutely necessary to correct the positioning of the hip. Without surgery the leg length discrepancy will only get worse and Nathan’s mobility will begin to be compromised. I assume he would also eventually be in pain, but we didn’t talk about that.
- The shape of the “ball” will not be corrected through surgery. Best case scenario is that it would resolve itself with time (and growing) once in the correct place. This will need long term monitoring and could need medical intervention in the future.
- During surgery, they try the least invasive procedure first and from there progress as is needed to get the hip into place. Best case scenario is a small incision in the tendon and the hip pretty much getting itself into the proper place on its own.
- Nathan will have a cast that immobilizes his right hip and (we think) his whole leg. He will need a few days of recovery in the hospital and then will be home in a cast for 6 weeks - 3+ months, depending on how invasive the surgery was and how healing progresses.
- After the cast he will transition to a nighttime brace which will be another 6+ month long process.
- In her words, Nathan’s orthopedist will be following him “throughout his childhood.”

We keep reminding ourselves that this isn’t life threatening and it isn’t scary, but that doesn’t mean it’s not upsetting, frustrating, disappointing and leaving us once again asking why? The fact that the displacement and growth issue (my words - not medical) in Nathan’s right hip could likely have been caused by his central line is frustrating, but he needed that line to survive, we aren’t second guessing it, just frustrated. The fact that Nathan is SO ready to walk, and depending on when the surgery is scheduled, could be beginning to walk, and will then have a cast preventing him from walking, breaks our hearts, but we’re told that kids pick up right where they left off once the cast is removed. The fact that the last time we were surrounded by doctors at Children’s Hospital it was the orthopedists who were least worried about Nathan, we find a bit ironic. And this once again puts us in limbo. What will childcare look like with this new challenge? How will this impact our summer plans? Will we need to take time off from work?

So what is happening right now? Right now Nathan’s orthopedist is consulting with her colleagues to see if we should have any additional imaging done of Nathan’s hip before surgery and with his team from his last stay in the hospital to see if they have any additional concerns. She expects that we can have a surgery date set in the next 4-6 weeks. For now we are thinking of as many questions as we can so that we’re prepared for the next conversation and can make an informed decision about a surgery date and everything that follows.

That’s what we’re going to be doing in the next 4-6 weeks. We would love it if you would be praying for us. We know from Nathan’s rocky beginning that prayer works. Here is how you can pray with us:
- that Nathan’s hip will move into position in its own and he will not need surgery
- that if surgery is needed it will be the least invasive
- that Nathan will have an easy, uneventful recovery from surgery and healing in his hip, and that he will handle the recovery process well, both physically and emotionally
- that this will be IT, no future hip issues
- for patience for me and Tim as we wait

Thank you for reading this far, for keeping up with our little monster and for your prayers. We’ll keep you posted.

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